saintmaybe

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to!  

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover I really don't want to suffer like that for 6 weeks!

Thanks

K x

I went through pretty much the exact same thing, except I was four or five months gluten free. I decided I HAD to know if it was celiac disease, and did do a gluten challenge. In the end, my celiac diagnosis was negative, but I have an enlightened gastroenterologist, and was diagnosed with gluten sensitivity.

In the U.S., this is still not a formally recognized diagnosis, although it's gaining a lot of traction in the established medical community. My primary care doctor is aware of it, and many of her patients are gluten free.

I've since found out that I have gluten sensitivity on both sides of the family, including tendencies towards alcoholism, depression, and Alzheimer's.

Probably the most direct evidence of gluten sensitivity is my brother, who tested positive for Ankylosing Spondylitis, and is now eating primal to get the inflammation down. I'm convinced I have it too, and have triggered a flare by going back on gluten for testing. Both my shoulders, my lower back, and my hip are stiff and sore to the point of not getting restful sleep at night. I'm going to see a rheumatologist next week to confirm the diagnosis, which is actually more of a diagnosis of elimination.

I'm glad I got my diagnosis though, because I feel I can help contribute to the research surrounding gluten sensitivity. Understanding this disorder, or disease process, is still in it's infancy. I'd say getting tested depends on your need to know, as well as the potential value you see a diagnosis adding to your life.

Hey, thanks for the welcome (and the compliment on the tat)! I loved Ireland. I still need to do a blog post on Amsterdam, which I did last year - I would love to go back to both of those places. The Irish folks make me want to move there. And in 3 weeks I'll be in Thailand - can't wait. Although I fear gluten-free eating a little more in Asia, should be interesting if nothing else!

Welcome! I checked out your blog, and really liked how readable it is, and the first person perspective on your early gluten free experiences. As to the Gluten-Free travel, I've come across some pretty focused travel websites, like one on India, that have been pretty awesome about what and how you can eat. I've heard the Far East is a little easier on gluten free travelers, actually, because wheat isn't really traditionally a staple crop, depending on where you travel. The Middle East is a different story, since wheat agriculture originated in what are now Syria and Turkey.  

Ummmm....just because a person nearly dies from Celiac, does not mean they are super sensitive to gluten.  There are plenty of people on this board who nearly died from it, including myself, and they don't go through life labeling themselves as a super sensitive. Everyone with Celiac, all the way down to the gluten sensitive, need to avoid gluten, period. But they don't need to be paranoid about it either. There is a balance with this disease and most people, who learn how this disease process works, do very well with it.

He didn't nearly die. He expired. He is deceased. He is no more. And yes, celiac or gluten shock is a syndrome brought about when someone on a strict gluten free diet is inadvertently exposed to gluten, goes into tachycardia, and in rare cases dies. Feel free to look it up. I would say that's pretty damn sensitive.

Also, with Boots, PF, Smashbox, PF, Red Apple, urban decay, elf, neutrogena- I really don't feel limited. Not to mention the gluten free products within brands like covergirl (who has gotten much better about ingredients communication) and olay. I mean, I am limited in the sense that I have acne prone skin even at 27, so I use sensitive skin formulas, but that's a whole different issue. Point being, these are brands I used before I went gluten free and loved then. Bonus that they are gluten free now! W00t! You're acting like it's a terrible trial to find these things, and maybe it is if you're a huge makeup snob. I have not and will never pay forty dollars for a bottle of foundation no matter how good it supposedly is. I also don't insist on no possibility of cross contamination, although I know people who do, and I respect that decision. Especially not knowing what led them to it in the first place. There are some pretty rare (and expensive) brands that can accommodate that choice. As long as there are no listed gluten ingredients on the back and it doesn't induce a reaction in me, I'm good.

I don't think I'm the one here with an attitude problem.

Eep - it seems that there's only one right answer here which is "use only gluten-free makeup"? I shared my thoughts - and said "of course everyone is different" but I also don't think makeup is something that *most* Celiacs need to jump up and throw away right away. It's worth an investigation and some research, and everyone should be able to make an informed opinion based on their own experiences.

Actually, no, that isn't what I said at all. I'd be lying if I said I thought it was okay for a celiac to keep on using gluten containing makeup, because honestly? I think there are equally as good if not better brands available in stores that are all gluten free. PF, Neutrogena, Boots Brand No. 7, and E.L.F., and Milani are just a few that span the range of what's available just in CVS in a range of very affordable options. It seems like a risk that's unnecessary and totally avoidable. No wait, sorry, Boots and E.L.F. are only available at Target. Just mentally rummaging through my bathroom here.

But, in my first response, I said not all celiacs need to go out and replace everything, in the sense that they won't get gluten reactions by using gluten containing makeup. Me? I do. I really, really do. Did I used to? No. Do I now? Yes. What I didn't like about your response in particular was basically being compared to the girl sitting in the corner eating paste(by implication), and also not knowing what's affecting my own body.

If on a particular day, I've controlled for diet, for reasons of my own, by eating rice cakes, eggs, and soup, all of which I know to be non allergenic to me, and the only new thing I add is a new makeup product, and I get sick, I think the makeup is the culprit. Horses, not zebras. Follow up the next day confirms it, although I always take a gander at the ingredients in the makeup.

In a larger sense, it has to do with being empowered about my own health, as well as sharing experience with fellow celiacs. Ally7 can make an informed decision- anxiety is a tough, tough thing, and once those mental patterns are entrained, man it is difficult to get rid of them.

What I don't like are people saying oh, you must be mistaken, that method didn't work for you. Well, how do you know? Have you lived in my skin? "You must be mistaken." "You didn't feel what you felt." "It's all in your head." Hm. Where have I heard those words before? I was disappointed to hear them from fellow celiacs. That's where I was coming from.

I have Sjogren's Syndrome which affects my eyes to a huge degree. Believe me, having Sjogren's is a bigger deal than worrying about gluten in your make-up. I have not had a problem with most make-up out there and my eyes are extremely sensitive to many things because of the Sjogren's. I would imagine that anyone who wears eye make-up would not be rubbing their eyes with make-up on....that would make for a big mess. Ditto for the shower...who wears make-up in the shower?    I usually remove my make-up before hitting the shower.You can manage this lifestyle any way you choose but most people I know, with a little bit of care, do not eat their make-up.  Not a good habit to get into. If you have topical allergies, that's a whole other issue and then you may have to find a good hypo-allergenic make-up to wear.



You need to be less sensitive about replies to this board. The poster who replied to you was not stepping on anyone's experience, they were giving an informed opinion. The reason whole lines of products have been developed has a lot to do with marketing and making money...just like gluten-free food lines. If there was no money in
it, there wouldn't be so many choices.

I am glad you are feeling better but the super sensitive issue has not been proven. Most people take a long time to heal completely and have their symptoms resolve totally. Anyone can say they are super sensitive to gluten but it could be from other health issues that go along with Celiac or they are slow healers. The resolution to hair loss is common among us and usually is from vitamin deficiencies that take quite awhile to resolve and not so much from topical products...unless you are allergic to an ingredient, which may have nothing to do with gluten.

And one final thing as to the super sensitive issue not being proven: Tell that to my graduate advisor, who's son died in his early twenties from celiac shock. It's really insulting.

I have Sjogren's Syndrome which affects my eyes to a huge degree. Believe me, having Sjogren's is a bigger deal than worrying about gluten in your make-up. I have not had a problem with most make-up out there and my eyes are extremely sensitive to many things because of the Sjogren's. I would imagine that anyone who wears eye make-up would not be rubbing their eyes with make-up on....that would make for a big mess. Ditto for the shower...who wears make-up in the shower?    I usually remove my make-up before hitting the shower.You can manage this lifestyle any way you choose but most people I know, with a little bit of care, do not eat their make-up.  Not a good habit to get into. If you have topical allergies, that's a whole other issue and then you may have to find a good hypo-allergenic make-up to wear.



You need to be less sensitive about replies to this board. The poster who replied to you was not stepping on anyone's experience, they were giving an informed opinion. The reason whole lines of products have been developed has a lot to do with marketing and making money...just like gluten-free food lines. If there was no money in
it, there wouldn't be so many choices.

I am glad you are feeling better but the super sensitive issue has not been proven. Most people take a long time to heal completely and have their symptoms resolve totally. Anyone can say they are super sensitive to gluten but it could be from other health issues that go along with Celiac or they are slow healers. The resolution to hair loss is common among us and usually is from vitamin deficiencies that take quite awhile to resolve and not so much from topical products...unless you are allergic to an ingredient, which may have nothing to do with gluten.

And you need to let both viewpoints be expressed, especially as both are correct. I often fall asleep in my makeup, because I come home exhausted from work. I shower with my makeup.

I can quote MULTIPLE scientific studies where cosmetic companies have to demonstrate how much of their product is absorbed directly into the skin. There was another scientific study published in the British Telegraph demonstrating that up to 5 lbs of chemical products are absorbed absorbed through the skin over the course of the year.

Furthermore, why would cosmetic companies add all kinds of vitamins and nutrients to makeup and lotions, unless they could be ABSORBED THROUGH THE SKIN. Many of those complicated sounding chemicals on the back of the bottle are chemicals designed to enhance absorption rates. SO fine, go ahead and continue absorbing gluten if you really wanna. Ditto tons of lovely sulfates and detergents and phthalates. Floor cleaner is awesome for your hair, doncha know.

But don't, DON'T tell me what helped and what didn't for MY experience. Getting rid of Yellow 5 specifically, in my case, in my hair products, meant literally, and I mean overnight, stopping losing my hair. I mean from one day to the next. It wasn't like, oh look at that it's slowing down and then stopping. It was handfuls one day, and then stopping the next. So I'll take your advice with a grain of salt.

I'm simply telling you what my own personal experience has been. Obviously I'm not eating my eyeliner (thanks for that, Melissa), but it is right around your *eyes.* Clearly. Which are mucous membranes. Also, if you are anything like me, and rub your eyes when you're tired or frustrated or angry or overwhelmed, or if your makeup runs when you're crying or sweating or you're taking a shower, it can very easily get into your mouth.

If you happen to be a super sensitive person, gluten in your makeup can very much be a problem. ENTIRE makeup lines have been developed for this very reason. Ditto soaps and skincare products. No, not every celiac needs them. But don't be stepping on other people's lived experiences just because YOU'VE not had a problem with it.

I have massively improved physically (hair stopped falling out) and emotionally (anxiety much decreased) when I got rid of topicals with synthetic dyes and gluten.

On a side note, Original Poster Ally7, you may be having an issue with getting more sensitive to cross contamination. I have been over the course of getting better. I work as a retail manager in a home improvement store, and a lot of the drywall and drywall paste happens to have gluten in it, coincidentally enough. The constant exposure to the dust has been making me more sensitive. There may be things in your environment that you're not aware of yet. I didn't even think about my issue until Yolo brought it up in a post a while ago.

Hey guys!

I am fairly new to the gluten free stuff...I have been totally food gluten free since this past august. However my older brother who has celiacs disease for a while informed me my makeup and other products could potentially have gluten in them which will then enter my bloodstream and affect me. My question is I am having really bad anxiety lately and some of my products contain gluten...could it be the gluten? The anxiety just came on I am assuming I am getting more sensitive to my new allergy which is why it recently start? I don't really know just looking for some reassurance that its probably the gluten.

Thanks!

Hey, I'm almost six months gluten free. I've only just recently started reacting to all my topicals, including my makeup. However, I did so with a vengeance. I had a full blown gluten reaction to eyeliner that I hadn't vetted, and hadn't used in a long time.

Now I go on the manufacturer's website and investigate everything I put on my skin, and/or read all ingredients labels.

By the way, makeups that I love and that I can personally vouch for being mostly gluten free are the Physician's Formula and Neutrogena lines, but you do need to investigate specific products. You also have to throw away and start over with any lip gloss/ lip stick from pre gluten free. None of it is safe, no matter what you do.

I disagree. True, they didn't mean to gluten you, but they did. And ruined your shirt, purse, got you sick, ended your night. Businesses have to take responsibility for their mistakes and offer good service. I would have demanded the meal or comped or another meal at a later date on the house. Intention does not mitigate actual damages.

Can you stay with the new doc? If you also have something else going on being gluten free isn't going to mask it or prevent it from being picked up in tests. It sounds like your old doctor may not like that after your being ill for a long time and him not being able to figure it out someone else has. Might not be the case but I would change to the new more celiac savvy doctor if that is possible.

For some reason, doctors have this idea that being gluten free is an inhumane and profound hardship. It is baffling to me, since other people willingly eat fad diets or kosher diets or vegetarian or vegan. No one gets more crap for their diet than celiacs do, and it is a complete mystery.

From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.

Yes. In gluten ataxia, antibodies are attacking and destroying Purkinje cells, which are responsible for perception of space and your position in it. Celiac has also been known To cause severe MS like and RA like symtpto
S, the damage of which is so similar to the real thing, they are Often clinically indistinguishable.

If you read up about it, it says that it is dealing with the immune response. Says nothing about the type of symptoms, but that it is similar to what they do to desensitise people who are allergic to things.

Eh, I'm not holding my breath. Phase II is a long way from Phase IV, or on the market. Lots of products stall out in III or IV. Let alone getting through the FDA approval process here in the U.S. which is fraught with politics.

Aside from all of which, it sounds like a weekly injection. Thanks but no thanks. I'm not giving the pharmaceutical industry one more red cent than I absolutely have to for something that seems very intrusive and time consuming. Since I can just...not eat gluten, I'm gonna go do that.

It sounds like the vaccine is developed on an antiquated or limited understanding of the spectrum of celiac and gluten intolerant symptoms. Perhaps.

If it stops the body from attacking itself, in whatever capacity, in response to gluten, great! If it's only addressing the intestinal response, well, that's not so helpful for the thousands of us whose primary and *first* symptoms were neurological or "Other", even if we did go on to develop more traditional symptoms of the disease.